International TN Awareness Day

October 7th 2013 International TN Awareness Day

Written by Pamela Unverzart

There are those rare times in our lives when we are blessed with meeting an individual that radiates an inner light so powerful that it eliminates gloom with the lifting of their lips. Such light and optimism in a person is, indeed, extremely uncommon, yet even more so when it comes from a woman who deals with daily chronic pain potent enough to put the typical person down and out, hopeless and withdrawn. Such was my luck recently in meeting such a woman, and still - days later - the warmth of her light continues to linger around me, lifting my spirits when the world surrounding me tries to take on that dark tinged gray that often accompanies the pain of my trigeminal neuralgia.

“Toni” and I share a disease in common – trigeminal neuralgia (TN), but Toni has the added pain of severe cluster headaches that also attack with sporadic vengefulness. Her TN causes the cluster headaches to worsen and her cluster headaches cause the TN pain to worsen, so she suffers a never-ending battle of pain in her face and head. Although she believes the pain crept forward slowly through the years, the date she remembers the “real” pain began – the pain that she could never find her way out of – was July 7th, 2010 at 9:35 pm. While watching TV suddenly her face pulled downward in a painful attack, the pain strong enough that she felt she may have been suffering from a stroke or bells palsy. Through the pain, the right side of her face feels numb and deformed, but still sharply painful, like a Charlie horse in and around her eye.

Thus started Toni’s search for answers. Her search led her to physicians that prescribed the typical TN medications. Tegretol made her feel like she was swallowing her tongue. Klonapen made her feel like bugs were crawling all over her body. Finally, the drug Amitriptyline was prescribed, and it currently assists in managing the pain to a level that she finds acceptable, although nothing helps when the triggers are hit and the supercharged pain attacks linger.

Research on her disease at first frightened, and then frustrated Toni, as she delved further in an attempt to understand the pain that was changing her world. Realizing that information, support and awareness for the TN patient were limited, Toni decided to do something about it. Everything she read on the subject indicated that the disease would eventually worsen, but her optimistic spirit wouldn’t allow that to happen without her first stepping forward to make the most of every moment she’s given in which she can make a difference.

Donating her own monies and a lot of time, Toni set out on a path to change her world instead of allowing her disease to change it for her. She started the on-line group TNNME, pushing across international borders to bring more awareness to the disease, touching lives of people as far away as Canada, the United Kingdom and New Zealand. TNNME’s mission - to bring awareness to those with and without Trigeminal Neuralgia and Neuropathic facial pain through social media, asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their “Health Topic List" and by promoting research to find a cure - and its vision to be a source for those that suffer with facial pain and Trigeminal Neuralgia to be able to vent and share their stories, letting one another know they are not alone.

Toni’s drive and determination has not faltered. A self-described “pit bull” when she gets her mind on something, she has seen her petition to get TN recognized by the WHO speed through cyberspace, gathering over 3,000 signatures to date, while anticipating WHO to agree to put TN disease on their Health Topics List and consider making October 7th National TN Awareness Day official. Trigeminal Neuralgia ribbons have been manufactured and are currently for sale at http://www.tnnme.com/tn-awareness-day-ribbon.html. Profits from the ribbons are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.

The light that naturally spills out of Toni has brightened the paths of several other women determined to make a difference as well, and they, too, have joined Toni in her push to bring awareness to the disease. Toni is not just talk. Toni is all action. She has conceptualized a dream and put it to life, putting together an amazing group called The Trigeminal Neuralgia Awareness Fighters. Their first goal is to spread awareness about Trigeminal Neuralgia and Facial Pain Disorders by using Websites, Twitter FB, Blogs, Media, Newspapers, and Flyers, TN Awareness Cards and by whatever means one may have to do to get the word out there.

These women have been beyond successful, their drive and determination amazing. Toni is insistent in our discussion that she couldn’t have done it without the support of her fellow TN Awareness Fighters and wanted to bring special notice to their good works. A portion of Toni’s Awareness Fighters include: Nikki Samuel, Kate Chappell, Lagi Leau, Joanne Longston, Jenny LeCompte, Kennadi Herbert, Wendy Caira-Turnage, Jeanette Cole and Zaneta Scott. They, too, are special women with a drive to help change the world they live in for the better.

Above all else, Toni wants to spread the word to facial pain patients that they need to be their own advocates, to research more in order to learn about the disease affecting their lives, keep a diary to understand TN’s triggers and how better to keep the pain at bay. She stresses that life can still be lived to its fullest during those special moments when pain isn’t visiting, and urges the pain patient to pack those moments as full as possible, to take their mind to another level and learn to make serious life changes. She warns that taking the attitude of “woe is me” will only escalate the pain that won’t go away and makes everything bother you even more, so it’s best to realize that living with TN is a learning process and if something doesn’t work to help or if something that you do makes the pain worse, then change it! And that’s just what Toni is doing – she is CHANGING her world, determined on helping in any way she can to find a cure.

Toni is an inspiration that keeps on moving forward through thick and thin. Her courage and strength goes beyond explanation – she is a phenomenon of wisdom and bravery in the face of unbelievable odds. TNNME has allowed her to share those strengths with others. Like paying it forward, she spreads light as she goes – a light helping one see through the pain of today – an even brighter light promising a better tomorrow.

Visit TNNME.com today to join Toni and her Awareness Warriors in their drive to find a cure as well as bring awareness around the globe to this disease. Be inspired beyond words at what one person’s initiative to make her world a better place can do!